I was born and raised in Montgomery, Alabama. I am part of a large close Catholic family.
My amazing parents were very devout, loving and fair. They sent me, four brothers and my sister
through 12 years of Catholic schools.
All six of us graduated from college. I grew up happy and secure. I attribute my first 18 years of being guided
by my parents and teachers and loved by my family in giving me the strength to
survive Scleroderma.

I went to the University
of South Alabama. I finished college, got married, and found a great job
teaching third grade in Mobile. I had a
pretty good life going on. I looked
forward to every day. I had lots of friends. I had a lot of hobbies. And, I had a
ton of energy. I loved all kinds of arts and crafts. God had blessed me with a creative mind and
good hands. I liked to design and sew
clothes, draw, sculpt with clay, paint and cook. I had learned how to work with stained glass.
I designed and made both copper and silver jewelry. I was learning photography. God had also blessed me with a healthy
body. I was always small but I wasn’t
skinny and for my size I was very strong.
Remember, I had learned to hold my own with 4 brothers! I liked to work
out at the gym just to stay fit and healthy. All of my life, I had loved to be
outdoors. In the fall and winter I loved
to canoe, camp and tromp around in the woods. In the spring and summer, I was a
beach girl. I loved to fish the Mobile
Delta and the Gulf of Mexico. I was even learning how to hunt and call turkeys.
I was not a fabulous athlete but I could compete well enough in Frisbee,
softball and tennis. In backyard
basketball, I had perfected an outside corner shot that often helped me win at
the game of HORSE. These were things I loved to do and were so much a part of
my life and who I was. These are some of the things Scleroderma took away from
me.

It was during a summer
break from teaching when I woke up one morning and both of my knees were really
hurting. From that day on, my life began
changing drastically. The pain in my knees never let up and moved to all parts
of my body. By the time school started
back in the Fall it hurt to walk and it was hard to get up from a chair. After multiple doctor visits, a rheumatologist
gave me the news. I had Scleroderma.

I remember the last game
of tennis doubles I played with my girlfriends. Every time the ball hit my
racket, pain seared through my hand. When I walked off the court I knew I would
never play again. The last time I went fishing I couldn’t really grasp the rod.
I laid it down in the boat. I didn’t want to cast my favorite rod and reel
overboard. I jumped off the end of a pier one day and thought I would drown
before I could make it back to the ladder. I had not realized how tight the
skin had become under my arms and across my shoulders. I couldn’t swim anymore.
My hips and thighs became too tight to walk up stairs or take big steps.

At the end of the next
school year I had to quit teaching. Within what seemed like a short time I was no
longer able to dress myself or drive a car.
I had never been a depressed type person but this was a very hard time
in my life.

The disease progressed
rapidly. Every day there was something new to deal with. I had to hire a caregiver. The uncertainty and the stress were taking a
toll on my marriage. The pain spread to more and more parts of my body. I
developed multiple ulcers on my fingers, toes, elbows and down my back. It was
not unusual to have 30-40 ulcers at a time. As the skin tightened it itched and
burned. My hands were so swollen and inflamed most people thought I had been
burned. As my jaw receded my teeth became loose and I had trouble eating. My
esophagus became so small I could hardly swallow. My face had changed so
drastically, I scared little children. Friends and people I knew didn’t
recognize me. My thick wavy hair was thin and scraggly. I couldn’t brush it. I
couldn’t bathe myself, dress myself or feed myself. I couldn’t get in or out of
the bed without help. I got to where I was too weak to do much of anything. I couldn’t even sign my name. I was very sick.

My biggest enemy was and
still is pain. It had gotten to the
point that if someone just bumped me, it would bring tears to my eyes. I would close my eyes and imagine Christ
hanging on the cross. I would think of
the nails tearing through the tissue in His hands, and how the bones would tear
away as the weight of His body stretched down toward the ground. Nails piercing the tops of His feet must have
sucked His breath away. A gouge in his
side. Thorns in his head. How did He do this? Why did He do this? He did it for me. He did it so that I could go to heaven. Thinking of this, concentrating on this, my
pain wouldn’t feel so bad. At least I
didn’t have nails hanging my body to a cross, stretching and tearing my
tissue. I used this image often. I still use it today. I thought of His Mother at the foot of the
cross. Her son, her dear son, had been
ridiculed by dozens and dozens of people then crucified like a low down
criminal. Her heart ached for him. Her son had died. I felt like part of me had died. I was so sad.
I was embarrassed at how I looked.
My body was bent and twisted. My
hands looked like claws. I was so
skinny, just skin and bones. My jaw was
pulled back. My teeth were crooked and
they stuck out. I lost my pretty looks. Walking was slow and painful. I really needed a wheelchair. I prayed for help. Sometimes I prayed so hard I would get
light-headed.

My family and I thought I
was dying. I felt like I was dying. I spent a lot of time in the bed. I couldn’t do much else. I spent most of my days alone. Everyone else was at work. I had a lot of time to think and think I
did. I didn’t think much about actually
dying. That was a little bit scary and too many ‘what if’s”, but at the same
time I wasn’t afraid of dying. I was
really sick. Scleroderma has no
cure. I was suffering. I was scared of living. I thought about my family and my
friends. I wondered what their lives
would be like. I thought about the
graduations, births, weddings and fun outings I would miss. I thought about heaven. I decided heaven is going to be more awesome
than I am able to even imagine. More
beautiful, more happy, more joyful.
Perfect. This excited me. I
wondered what God would say to me. I
hoped He would let me in.

It was a bright clear
day. I had a big window in my bedroom
and the room was lit up with sunshine. I
was in the bed, watching the ceiling fan go round and round and I was talking
to God. As clear as the day I got a
message from God. His voice didn’t boom out across my room but I knew He was speaking
to me. I knew, at that moment, that I
was not going to die. Not right then anyhow.
It was overwhelming. I felt it
grab my heart muscle. I was excited. I
was really happy! From that day on I
knew I wasn’t going to die from Scleroderma, I was going to live with
Scleroderma.

Now the hard part really
began.

Now that God told me I wasn’t going to die,
I had to get out of my house. For the
last two years I had mostly stayed inside.
I didn’t like mirrors and I didn’t like cameras. Before leaving the
house to go anywhere, I would pray to God for strength. I would pray that Mary would wrap her cloak
around me and protect me. I developed a
strong relationship with my Guardian Angel.
I gave him a name and asked that he never leave my side. I had to build up some thick skin to go out
my door. People made fun of me right to
my face. People stared, people
gawked. Some little kids were scared.
People treated me as if I were contagious or mentally slow. I still find it amazing at what some people
say to me. I hated being in a
wheelchair. I had my feelings hurt more
than once but I kept praying. “Give me strength God. Give me strength.” It took a while to build real confidence.
Today, I’m fine. I go where I want, when
I want. If people treat me ugly, I know they are the ones with issues. If people don’t like the way I look, then
they don’t have to look at me. If they
don’t want to be around me, that’s their problem. They can leave. I’m a child of God and a human being on this
planet. I belong. Just like everyone
else.

Do I ever get mad at
God? I don’t get mad at God
anymore. Sometimes His sense of humor
gets to me. Things happen and I ask,
“Really, Lord?” Sometimes I get
frustrated with how much He still puts on my plate but when that happens I just
hand it back to Him and say, “Okay, I’ll try, but You’ve got to help.”

Did I ever get mad at
God? Oh yeah! Yes!!
I wondered WHY? I had been a good
person. Why was this happening to
me? Why was God doing this? Why would God give me so much artistic
ability and then take my hands away? God
gave me good looks and a pretty face.
Now I was scrawny and freaky. I
was physically fit, now I had to have a team of caregivers. Like my Dad, I was
a good storyteller. Now I couldn’t speak
clearly. God told me I was going to live but like this? What was I supposed to
do now? But every time I’d get mad and
pitch a little fit with God, I would be blessed with a sense of peace. I am not a bad person. I didn’t do anything wrong. I’m not being punished. The devil is not in me. It’s not a burden God
gave me to get a ticket to heaven.
Everybody has some burden. Living
with Scleroderma is just what happened to me.
It is my life. One day I hope to
go to heaven. I know heaven will be
glorious but for now, I have a happy life here.

I look at myself as
Uniquely Weird. I do not mind being just
a little bit different. I would not
choose it, but, it could be worse. I still have talents I can share. I’m still a bit feisty and I do like to have
fun. I sometimes think I have more than
my share of dopamine and norepinephrine.
It’s a great blessing, really.
I’m just happy. I know I’m
blessed. I start each morning with the
simplest prayer, “This is a day the Lord has made. Let us rejoice and be glad in it.” Sometimes, if I’m still half asleep, I have
to repeat it over and over until it is in my heart. THIS IS A DAY THE LORD HAS MADE. LET US REJOICE AND BE GLAD! Yeah! Rejoice! Be Glad! God gave us another day and this
WILL be a good day. I believe it. You should too. It will make life easier. Every day is a blessing. I know each day won’t be perfect but
remember, there are no problems, only situations. If an adverse situation comes up, I try to
put it in perspective. In the whole
scope of things, how much does the situation really matter? Is it really worth getting upset and unhappy
over? Most likely, not. I do what I can to make it better but I always
rely on God’s hand to calm me down.

During each day I TRY to
be kind and thoughtful. I have my
moments, but I do try. We all know the
Golden Rule. “Do unto others as you
would have them do unto you.” I take
this rule seriously. God created each of
us in His image and likeness. God is in
everyone. I want others to treat me nice.
Nice matters. I try to treat others
the way I need to be treated. Believe
me, being nice will make your day easier.
Forgive people who break these rules.
You don’t have to forget, but in the long run, you’ll be happier with
yourself, if you forgive. Forgiveness liberates the soul.

For each task or project
I take on, I try to do it well. My Dad
would say, “Do it with vim and vigor.”
Doing even the simplest task well gives me satisfaction. A sense of satisfaction makes me happy. I try
to think positive and be positive. God created
this magnificent universe out of love.
It is full of positive energy. I
try to pull in this positive energy. I remember the angels and saints. They are positive energy. I ask them to send me energy. And most of all, I let the Holy Spirit be a guiding
force in my life.

These are just some of
the wonderful things I’ve learned after living 57 years and having over half of
these years complicated by an ugly disease. I am a lucky person. Good things are always coming my way. I am often amazed at how many good things
happen to me. Little things, big things,
they all seem to work out well. I have a
wonderful family, sweet caregivers and great friends. I am smothered in
blessings. When I was a young woman, I
certainly did not imagine my life like this.
It is NOT what I wanted. But, it is what it is. So, make God your
friend. Live each day with vim and vigor. Think positive. You’ll be happy. God is my friend. My life is good.

The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.